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Original poster

How likely is it ADOS will DX and be wrong?

26 replies

hereidrawtheline · 07/08/2009 15:21

DS is being referred for the ADOS test and I am getting cold feet. Basically I wont beat around the bush I am afraid he is just precocious and the negative stuff is too much my fault. I dont want him being mislabelled as ASD. If the ADOS test says he is on the spectrum what are the odds they are wrong?

OP posts:
TotalChaos · 07/08/2009 18:42

I think it's highly unlikely an ADOS DX of ASD (or indeed any DX) would be wrong, ADOS is meant to be a particularly good diagnostic tool.

BONKERZ · 07/08/2009 19:03

i remember when we had the date for DS ADOS test, i was all mixed up emotionally.
part of me was terrified they would tell me DS did NOT have asd because then it would have meant DS was just naughty and aggressive and would have meant i was a terrible parent.
part of me hoped DS didnt have ASD as autism is a scary thing and i was scared for his future and what a DX would mean for him
part of me desparately WANTED ds to have asd (which sounds absurd) but it would have explained all the behaviours and quirks and meant we were no longer guessing! IYKWIM.

from my experience the ADOS is an indepth test and enables the Dr to see minor and major traits. without the ADOS my son would never have been labelled as ASD as the more subtle traits were masked.

lingle · 07/08/2009 20:14

hereIdraw,

In your position I'd go for it.

Best of luck with whatever you decide.

Original poster
hereidrawtheline · 07/08/2009 20:55

oh we are definitely having the test... I guess I was just wondering how much confidence I should place in it. I have been really painfully aware lately of DS not fitting in almost because people expect him to be weird and I've been wondering if I hadnt pushed for help etc no one would know and indeed he may be totally normal and it is me who is totally wrong. So basically I am shitting myself!

OP posts:
5inthebed · 07/08/2009 21:01

HIDTL, the ADOS is a very accurate tool of dx and ASD. One of the women who was in on DS2's ADOS had tld me that in all the years she had been doing them (and it had been a fair few) only one child out of however many had been undiagnosed with ASD.

Have you had a date yet?

Original poster
hereidrawtheline · 07/08/2009 21:05

no we havent got a date yet. I think... I think I am hoping they tell me he is not ASD. But I am not sure. And I dont know how I can possibly convince everyone he isnt SN after the last year. I know I sound totally insane just ignore me I am really more thinking aloud than really meaning what I say totally literally.

OP posts:
5inthebed · 07/08/2009 21:09

I know exactly how you feel. We had a paed appointment a few months before DS2's ADOS (actually, 3 days before Christmas) and he had said we were probably looking at autism. When we had the ADOS me and DH were both convinced they were wrong and we were just being paranoid parents.

You're not insane at all (not yet anyway)

Original poster
hereidrawtheline · 07/08/2009 21:13

Love the sanity vote of confidence

I just, for the first time really am finding the word autistic quite impossible to stomach. It doesnt seem to match my sunny son.

OP posts:
blossomhill · 07/08/2009 21:21

I know autism can seem so scary pre dx but for me now it is actually a relief and you don't get much sunnier than my dd

5inthebed · 07/08/2009 21:42

Tell you what, I can borrow you my DS1's word for his brother, and that is "autismic". Makes him sound like a superhero

mysonben · 08/08/2009 09:54

Hi, no experience on the subject as we are ourselves caught up in the long process of a formal dx of asd.
But i can sympathise with you all the way, all these decisions are so hard to take and stick with.
We are too on a constant rollercoaster of emotions.

Bonkerz has written a reply so right to how i feel at the moment.

I would say to you "go for it" however scary it may be.

trace2 · 08/08/2009 10:10

go for it you'll be fine ! i still wonder if we got right dx even now.

Original poster
hereidrawtheline · 08/08/2009 12:24

thanks everyone

DS is 3 today! We are setting up for his party I am taking a little tea break and praying he falls asleep I just put him down for a nap. If he doesnt he will never make it through the day.

5inthebed I love autismic! Brilliant!! Thanks for the loan

OP posts:
trace2 · 08/08/2009 13:19

awww happy birthday little hereidrawtheline have a lovely day!!!!

5inthebed · 08/08/2009 18:34

Happy birthday mini HIDTL! My DS2 is 4 today, and Silverfrog's DD1 is 5. Great day for a birthday

Hope he has a lovelyparty.

Original poster
hereidrawtheline · 09/08/2009 10:49

hello!! Happy Birthday 5's DS2 and Silverfrog's DD1 too!!!

His day was lovely in the main but was also a little disastrous. I accidentally broke his pinata when he was supposed to take the final swing, I thought it had some hit left in it still and wanted to help him out a bit as he'd been beating it happily for 20 mins but when I hit it it broke and he screamed as if he had just seen his whole happiness butchered. It was very upsetting and also hugely embarrassing as I felt like the worst mother ever as it seemed as if I wanted to break it for me. He was so angry at me, hitting me etc I felt truly awful. I even had nightmares about it all night last night!

Other than that it was good but by bedtime he was just so manic he was unbearable and not speaking anymore just making noises and it was really really exhausting. On the plus side he slept like a log as did me and DH and now we are opening his presents. He is still manic as anything though but at least not violently inclined so far today.

OP posts:
5inthebed · 09/08/2009 11:04

Oh bless, I'm sure it was an accident. He would have forgotten the whole thing by dinner time anyway.

Hope you have a less eventful but fun day today.

Original poster
hereidrawtheline · 09/08/2009 11:23

not looking less eventful - I think he has chicken pox he has headache, rash on his arm, super irritable. I am waiting for a call back from the OOH doctor.

OP posts:
5inthebed · 09/08/2009 17:56

Oh poor thing. Let us know how he gets on.

daisy5678 · 09/08/2009 20:49

ADOS great. Very, very subtle and clever - everybody involved will have been trained very intensely.

Original poster
hereidrawtheline · 10/08/2009 16:04

I am kind of looking forward to ADOS again thanks to your reassurance. I just feel like hey, everyone says its a bloody good test. If they say he isnt ASD then I can put it to rest if they say he is then I can just accept that. Not sure which will be worse! Thank you.

DS is still sick and spotty but it isn tchicken pox, seems a viral rash.

OP posts:
5inthebed · 10/08/2009 19:12

Glad he hasn't got the dreaded pox. Hope he is better today.

pinkchampagne · 14/08/2009 13:59

My DS has to have his ADOS test a week on Tuesday & I am dreading it. I pretty much know what the outcome will be & don't feel ready to have it all confirmed.

daisy5678 · 15/08/2009 10:50

Dxs are hard, but also a way to move forward, signpost help etc.

Good luck, pinkchampagne.

logi · 15/08/2009 18:58

my son had ADOS test and wasnt dx with ASD yet i didnt think they seen enough of my son,i had 2 hour long appointments and that was it,then i was told there was something different about my son so he was refered to CDU where the psychiatrist has also said that he has something different so hes being assessed over longer periods of time for a few weeks and we find it very stressful waiting for a definate dx.